Thursday, June 08, 2006

What I Learned from my Defective Family Tree, Lesson 1: Stubborn or Stalwart?

One of the hardest things about being chronically ill is learning to ask for help. Our conditions are not going away—or else they wouldn’t be chronic, would they?—and as much as it’s frustrating, even sometimes embarrassing, to have to ask for and rely on the help of others, it’s a must if our goal is to maintain optimal health.

Don’t think I was always this sane and logical. In fact, I rarely am and it is a constant battle to re-draw that fine line between being independent and self-sufficient and being…well, stubborn and foolish. After all, when I overdo it, I am the one who suffers most. Why not admit when I need a hand doing the grocery shopping or cleaning the house, or voice when it would make a huge difference if we went out somewhere close to my house so I didn’t have to drive a long distance? If I don’t speak up, I will suffer for it, whether that means my muscles get weak and sore from adrenal depletion or the extreme fatigue of low oxygenation washes over me.

Since my health status changes practically by the hour, sometimes the best-laid plans fall to the wayside and things I thought I could accomplish alone are no longer possible. Because the only predictable thing about chronic illness is its unpredictability, I need to be able to adapt just as readily as my body dictates.

Luckily for me, I am not only a medical freak, I come from an equally bizarre family. My mother has rheumatoid arthritis and degenerative bone disease, and my father is a cancer patient, heart patient, diabetic, and one of the few people I’ve ever heard of who suffers from polymyositis, a rare neuromuscular disease.

Yes, the fruit doesn’t fall from the genetically defective tree, does it?

However, there’s an upside to my dubious lineage. Except for my older brothers, who are pretty healthy, we’re all patients. But the flip side of that means we’re all caregivers too, depending on who needs it most. When I am in respiratory failure, my mother eschews her searing back and shoulder pain and sits by my side in the ICU. When I am having a good day and she is not, I drive her around to do her errands and help fold her laundry. When my father overdoes it and his fatigued muscles cannot move anymore, I scold him into resting and order him to cancel his plans and take a nap.

Oh, the irony. The very things I find so hard to do are so easy to tell other patients to do! I could either remain the world’s biggest hypocrite—I once conducted a conference call from a bed in the ICU, face mask and all—or I could take some of my own advice, advice I can’t go a few days without hearing from my mother or father.

In a family of patients where everyone needs help now and then and every condition is relative, you can’t get away with too much. Someone will call me on my lunacy and my tendency to work solely in overdrive just as quickly as I would for them.

Turns out, the best way to ask for care is to know how to give it, too.